We’ve got quite a bit to fill you all in on… But just a quick note that inter dispersed throughout the blog you’ll find some photos from the one-year session we did last month in Loose Park. Needless to say, we think the shots came out GREAT! Thanks again Beth!!!
Firstly, we FINALLY heard back from the Pulmonologist in terms of Gwendolyn’s MRI. Unfortunately, it was more of the same in terms of there not being a clear path for us moving forward. He still felt as though the scan showed that Gwen should get decompression brain surgery but when he consulted with the Neurologist (The doctor that… You know, is the actual specialist and that would be called on to perform the surgery) there was a continued difference of opinion. So, after a lengthy conversation, the Pulmonologist decided to put Gwen on a month-long at-home sleep study with our good friend the apnea monitor.
The argument from Mom and Dad’s perspective is that the clinical sleep study isn’t a true rendition of Gwen’s normal sleep patterns because of a combination of several factors (being wrapped up like a mummy so the probes stay in place, getting moved on a regular basis by the person staying with her so they can chart how she sleeps in different positions, being in a strange place, it only being a one-night affair, etc.). As a disclaimer, we agree that she’s having some sleeping issues but we still aren’t convinced that they are as dire as the Pulmonologist thinks they could be. But since we “only” specialize in raising Braelyn and Gwendolyn, not infant sleeping patterns, we asked for an alternative test and that’s when this method was suggested.
While the apnea monitor isn’t as sensitive as the clinical sleep study diagnostics are, it is much less intrusive to Gwen's normal sleep patterns. So, we think it will tell them with a fair level of confidence how may true apneas Gwen is having and even pinpoint if they are central or obstructive in nature. We’re only about a week into the process so they won’t come back to get the information downloaded until around Thanksgiving. Then it will need to be looked over and interpreted by the doctor. So, that song-and-dance will go on for a little longer... Yep, we guess the great sleep saga continues. We can report that she’s done rather well in terms of it “beeping” off. Typically, she goes off 2-3 times a night and even had one evening without a single issue. Usually, when the monitor goes off it only happens because Gwendolyn wiggles on her back. That wasn’t as frequent of an occurrence earlier in the year but it is a happy side effect of her gaining continued mobility and strength in her legs. Now, she tends to flex those legs when she’s tossing and turning at night.
As for Gwen’s eating, she’s continuing to make good strides there. She and Braelyn now eat basically the same items (only Gwen’s portions are cut a little smaller and she’s learning how to actually feed herself so she still requires a parental unit to spoon-feed her constantly). She is still working on patience when it comes to eating food. As soon as she swallows the item in her mouth, she begins to whine because she’s so concerned that we’re going to take it away from her before she's full (as we did earlier when she could only eat a specific amount at each meal). The poor thing has been deprived of a “normal” feeding situation for so long that she’s got to kind of learn the whole process and hasn’t yet realized that she isn’t on a limited intake for the time being. But all things considered, she’s been a champ with her new diet!
Not to be forgotten, Braelyn’s also doing well. On Saturday she went to work with Dad while Mom and Gwendolyn spent some mommy-daughter time together. Dad totally thinks that Brae got the better end of that bargain, but he’s bias of course. Dad’s work assignment that day was to assist as the Chiefs halftime show practiced. The act for yesterday’s game consisted of Jazzercisers so Braelyn spent most of the time “dancing” to the music with her typical head bob and smiling at the random strangers that exclaimed “What a cute boy.” every time they saw her. (That’s what happens when you look a little too much like Dad and you've been allowed to leave the house in a blue shirt we suppose!)
Since Grandma McKee spent the weekend visiting with relatives back in Iowa, the girls and Mom stayed at home while Dad worked at the Chiefs game. Actually, Dad was a little jealous that he couldn’t just be a couch potato himself. Still, he’s sad to report that Braelyn fell asleep on the couch during the game… We guess she’s got a lot to learn!
;)
At least the Chiefs were able to hang up another “W” yesterday. Tough decision for the girls next weekend… Watch the Chiefs game or go trick-or-treating.
Firstly, we FINALLY heard back from the Pulmonologist in terms of Gwendolyn’s MRI. Unfortunately, it was more of the same in terms of there not being a clear path for us moving forward. He still felt as though the scan showed that Gwen should get decompression brain surgery but when he consulted with the Neurologist (The doctor that… You know, is the actual specialist and that would be called on to perform the surgery) there was a continued difference of opinion. So, after a lengthy conversation, the Pulmonologist decided to put Gwen on a month-long at-home sleep study with our good friend the apnea monitor.
The argument from Mom and Dad’s perspective is that the clinical sleep study isn’t a true rendition of Gwen’s normal sleep patterns because of a combination of several factors (being wrapped up like a mummy so the probes stay in place, getting moved on a regular basis by the person staying with her so they can chart how she sleeps in different positions, being in a strange place, it only being a one-night affair, etc.). As a disclaimer, we agree that she’s having some sleeping issues but we still aren’t convinced that they are as dire as the Pulmonologist thinks they could be. But since we “only” specialize in raising Braelyn and Gwendolyn, not infant sleeping patterns, we asked for an alternative test and that’s when this method was suggested.While the apnea monitor isn’t as sensitive as the clinical sleep study diagnostics are, it is much less intrusive to Gwen's normal sleep patterns. So, we think it will tell them with a fair level of confidence how may true apneas Gwen is having and even pinpoint if they are central or obstructive in nature. We’re only about a week into the process so they won’t come back to get the information downloaded until around Thanksgiving. Then it will need to be looked over and interpreted by the doctor. So, that song-and-dance will go on for a little longer... Yep, we guess the great sleep saga continues. We can report that she’s done rather well in terms of it “beeping” off. Typically, she goes off 2-3 times a night and even had one evening without a single issue. Usually, when the monitor goes off it only happens because Gwendolyn wiggles on her back. That wasn’t as frequent of an occurrence earlier in the year but it is a happy side effect of her gaining continued mobility and strength in her legs. Now, she tends to flex those legs when she’s tossing and turning at night.As for Gwen’s eating, she’s continuing to make good strides there. She and Braelyn now eat basically the same items (only Gwen’s portions are cut a little smaller and she’s learning how to actually feed herself so she still requires a parental unit to spoon-feed her constantly). She is still working on patience when it comes to eating food. As soon as she swallows the item in her mouth, she begins to whine because she’s so concerned that we’re going to take it away from her before she's full (as we did earlier when she could only eat a specific amount at each meal). The poor thing has been deprived of a “normal” feeding situation for so long that she’s got to kind of learn the whole process and hasn’t yet realized that she isn’t on a limited intake for the time being. But all things considered, she’s been a champ with her new diet!Not to be forgotten, Braelyn’s also doing well. On Saturday she went to work with Dad while Mom and Gwendolyn spent some mommy-daughter time together. Dad totally thinks that Brae got the better end of that bargain, but he’s bias of course. Dad’s work assignment that day was to assist as the Chiefs halftime show practiced. The act for yesterday’s game consisted of Jazzercisers so Braelyn spent most of the time “dancing” to the music with her typical head bob and smiling at the random strangers that exclaimed “What a cute boy.” every time they saw her. (That’s what happens when you look a little too much like Dad and you've been allowed to leave the house in a blue shirt we suppose!)
Since Grandma McKee spent the weekend visiting with relatives back in Iowa, the girls and Mom stayed at home while Dad worked at the Chiefs game. Actually, Dad was a little jealous that he couldn’t just be a couch potato himself. Still, he’s sad to report that Braelyn fell asleep on the couch during the game… We guess she’s got a lot to learn!;)
At least the Chiefs were able to hang up another “W” yesterday. Tough decision for the girls next weekend… Watch the Chiefs game or go trick-or-treating.
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